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Noah Mitchell Warden was born December 23,
2008, weighing 9lbs and 1oz by emergency c-section at 8:51am. Noah
did not breathe or have a heartbeat for the first 13 minutes of his
life. He was taken to Children's Hospital in order to have a
procedure done known as brain cooling in attempts to minimize damage
caused by perinatal asphyxia. Noah's brain cooled for 72 hours after
which time the hospital ran an MRI and an EEG to determine the
extent of the damage. Unfortunately, the results came back with
devastating news. Noah had suffered "global damage" to his
brain. As a result the prognosis was grim and they believed Noah had
no chances of survival or had the capabilities to know how to ever
breathe on his own. Although Noah was removed from life support,
God had other plans for Noah and he came home three days later with
hospice care.
At age eight and a half Noah cannot sit, walk, talk, or
self-feed but is cognitively very bright, aware and understands
everything. Today, Noah has the diagnosis of Hypoxic-Ischemic
Encephalopathy (HIE) resulting in spastic quadriplegia cerebral
palsy with athetoid movements. Noah's also has a history of seizures
and has several secondary conditions related to his primary
diagnosis such as a severe sensory processing disorder or (SPD)
which presents itself as a gagging and continual vomiting when he is
experiencing difficulties with his SPD.
Noah is on EPSDT Medicaid both due to his disability and low family
income guidelines, he is also on the State's HCBS-CES Medicaid
Waiver which is supposed to cover the costs that traditional
Medicaid doesn't cover alone.
However, because of his mother's strong advocacy efforts and
speaking out in the media, local new stations and going public with
the mishandling for tax payer dollars through non-profit
organizations that manage Medicaid funds for children with
disabilities, Noah has directly been targeted and is suffering from
the retaliation and retribution as a result of his mother coming
forward. As such, nearly all of Noah's medically necessary Medicaid
funding requests are being denied.
In each case an appeal has been filed, and while we have
prevailed on all cases before an Administrative Law Judge who has
agreed that Noah's requests are being unjustly denied, the State of
Colorado has a provision called an Exception to Initial Decision
which they can file to void any favorable ruling by an
Administrative Law Judge. Once they do that they can continually
reverse the success we have before an appellate court and renders
the appellate process moot.
Noah is now on his 9th denial with the first 8 cases having
been filed before the Appellate Court. Because of the level and
severity of Noah's diagnosis he needs a high volume of care,
adaptive equipment and medical needs for his quality of life and
daily living needs.
The Senior Director of EQ Health,Dr. Ellyn Theophilopoulos,
MD, JD, FAAP, (Who manages EPSDT Medicaid funded decisions)
testified in Court that it is her position that Noah should be able
to fit into a wheelchair he was given at the age of two because he
has not outgrown it in weight limit regardless that he has grown in
height and width and is approaching the age of nine years old.
Furthermore, on the record she stated in her testimony that she
believes that it should be his mother's job to carry him since she
is his full time CNA (Certified Nursing Assistant) and that Medicaid
is not obligated to meet the needs of the child out in the community
only in a home setting and that taking Noah out in public is
optional on the part of the parent's.
While the Judge sided with Noah's family and deemed that Noah
does need a transit ready wheelchair option, the State overturned
that decision by filing an Exception to Initial Decision which they
do in all stages.
Noah's most recent denial being wheelchair accessories that he needs to prevent pressure sores, injuries and give him better positioning to his high tone.
Other denials have included; Carpet Saver to keep his area hygienic
and free from incontinence accidents, habitual drooling and vomit
from his reoccurring SPD episodes which he exhibits frequently even
in his own environment and home setting; a $100 Wedge Pillow;
Communication needs; Adaptive Equipment that the state has deemed
"a luxury," and/or "home furnishing" even though
no other family member could use the adaptive equipment as a home
furnishing unless they had Noah's diagnosis and were his same size
and age; sensory clothing; and miscellaneous adaptive equipment,
such as walking and crawling assistive devices, and anti-suffocation pillows.
While Medicaid is currently funding Noah's supplemental drinks
they do not cover any of his other nutritional needs and supplements
that he needs in order to maintain optimal health as a successful
pureed eater. Those costs range between $400-$500 monthly alone.
The family has exhausted all financial efforts and has no
available lines of credit to be able to continue helping Noah with
his out of pocket costs or to pick up the voluminous denials from
Medicaid and his CCB Waiver.
While Disability Law Attorneys have decided they will take on
one of Noah's denials they cannot make a commitment or guarantee
that they will assist with any future cases, feeling that his mother
who has some legal experience is "fully capable" of
handling all matters in a court of law. Each case that they will
decide to assist with comes with a filing fee promissory note of $224.
Because Noah's uninsured medical costs are so high, we are seeking your incredible hearts, love and kindness to help get Noah the things he needs to lead the best possible life.
He's a beautiful little boy that lights up the world of all those
who are blessed to know him. He's deserving of such greatness in
his life. And with your help you can be a part of his journey and
his life's amazing story.
Thank you all in advance for considering to help Noah. While
we know that times are tough for everyone, even if you are unable to
donate or contribute to Noah at this time, your prayers, thoughts
and well wishes continue to mean the world to us and our family.
With much love and thanks,
Stacy, Chris, Noah & Luke
ღ¸.•´¸.•*´¨) ღ
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